Parental perspectives on the communication abilities of their daughters with Rett syndrome

Urbanowicz, A, Leonard, H, Girdler, S, Ciccone, N and Downs, J 2016, 'Parental perspectives on the communication abilities of their daughters with Rett syndrome', Developmental Neurorehabilitation, vol. 19, no. 1, pp. 17-25.


Document type: Journal Article
Collection: Journal Articles

Title Parental perspectives on the communication abilities of their daughters with Rett syndrome
Author(s) Urbanowicz, A
Leonard, H
Girdler, S
Ciccone, N
Downs, J
Year 2016
Journal name Developmental Neurorehabilitation
Volume number 19
Issue number 1
Start page 17
End page 25
Total pages 9
Publisher Taylor and Francis
Abstract Objective: This study describes, from the perspective of parents, how females with Rett syndrome communicate in everyday life and the barriers and facilitators to successful communication. Methods: Sixteen interviews were conducted with parents with a daughter with Rett syndrome with a pathogenic mutation in the methyl-CpG-binding protein 2 gene. Interviews were recorded and transcribed verbatim. Transcripts were analysed using directed content analysis. Results: All parents reported their daughters were able to express discomfort and pleasure, and make requests and choices using a variety of modalities including vocalisations, body movements and eye gaze. Parents also reported their daughters understood most of what they said and that the level of functional abilities, such as mobility, and environmental factors, such as characteristics of the communication partner, influenced successful communication. Conclusions: The perspectives of parents are integral to the assessment of communication abilities and have the potential to inform communication interventions for girls and women with Rett syndrome.
Subject Developmental Psychology and Ageing
Keyword(s) Expressive communication
Intellectual disability
International classification of functioning
Receptive communication
DOI - identifier 10.3109/17518423.2013.879940
Copyright notice © 2016 Taylor & Francis.
ISSN 1751-8423
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